June 10, 2007 – DROWNING IN (MIS-)INFORMATION

10/02/2009

I feel like I’ve been researching Alzheimer’s information for two months straight (and I have!) on top of a full-time job. I now know that there was a very unfortunate detail overlooked the day my dad was diagnosed with Alzheimer’s: the doctor’s office didn’t give my parents a New Patient Information folder which is standard upon diagnosis. Not knowing this (and that I could’ve just called the office to get it!), I have taken on all sorts of research from scratch: what to expect with Alzheimer’s, where to find support groups, how long they may live, things you need to know, etc. So, I’ve been immersed in this overwhelming research project – on top of freaking out and grieving myself! – trying to find out what steps we need to take, an expected timeframe of disease progression, where/when support groups take place in our area, etc. I took it upon myself because I knew my mother couldn’t handle it right now and that this information would be her salvation. I still get furious all over again when I allow myself to stew on the fact that the doctor’s office messed up a simple detail which has in turn caused me so much grief!!

Along my travels, I have read SO much information about Alzheimer’s. However, one publication said something so poignantly that no other did: in the final stage of Alzheimer’s, a patient will ultimately forget how to swallow and then how to breathe – and they will die. This fact sent me sobbing and over the edge!!! To try to picture that happening to my dad – oh my god! That is the hardest morsel to digest so far. It’s now not just the fact thathe’s going to die; it’s how he’s going to die!

According to the Alzheimer’s Association and other research, Alzheimer’s Disease can be broken down into 7 Stages. Based on this information, I (desperately) calculate that my dad probably entered Stage 2 in the year 2000 when he first started noticing changes. He probably entered Stage 3 in 2002, which was when he was initially tested and told that he may be entering the very beginning stages of dementia. He was in Stage 4 when he was retested in 2007, which was when he was diagnosed with Early-Onset Alzheimer’s. Then, based on this 7-Stage sliding scale, I “predict” that my dad may enter Stage 6 by 2012.

To me, Stage 6 seems like the final stage in which the person will cease to be the person you’ve always known. They’ll know their name but not their history; they’ll no longer be able to function on their own for daily activities like dressing, bathing, toileting; they’ll begin hallucinating – and wandering. According to the published information, the person with Alzheimer’s may survive anywhere from 3 to 20 years. Well, that’s not very helpful! God, I just wish someone could tell you WHEN shit was going to happen. But it’s all such evasive information; I think that’s part of the constant torment!